IJPDS International Journal of Population Data Science

https://doi.org/10.23889/ijpds.v5i3.2114.review.r1.reviewa

The introduction is informative and clearly set out, as is the research question. Given that national research has been conducted on public expectations of data use, it would be useful to know how the population of Kent, Surrey and Sussex may differ from this, both in terms of demographics and commonly held views on health and research.

Good selection of references.

This study is extremely relevant as we seek to build a body of work on public acceptance and trust in data linkage and sharing. I would like to see more on why it is important to do local/ regional projects such as this, other than as an awareness raising exercise, otherwise each project will add very little insight to the evidence base.

Good choice of research design; very good to see acknowledgement of the need to inform before meaningful discussion can take place.

Regarding population and sample, it's a shame that so few participants left education after GCSE. I would like to see explicit reference to reaching out to this group in the three recommended principles.

Results section is comprehensive and well laid out.

Discussion and conclusion: Interesting to see the point about participants referring to potential benefits in patient-facing services, as I have heard similar in informal discussions. I would like to see your (brief) thoughts about some of the complexities involved in providing this - is it possible at all? Any ideas for future research on social licence and data sharing?

The title is clear and informative, and the paper is well written and easy to follow. The abstract is an accurate summary of the full paper.

https://doi.org/10.23889/ijpds.v5i3.2114.review.r1.reviewb

A really interesting research question, and a very appropriate method by which to answer it. The context and underlying issues were clearly explained, and the justification for the approach taken was clear. I enjoyed reading this, and how accessible it made a complex subject and range of arguments. I also particularly appreciated the inclusion of other studies that have been done in this area, as well as international examples. My comments mainly relate to method; a few additional details if possible would be very helpful to other practitioners undertaking online deliberation.

p5. It would be helpful to include details of who the expert speakers were, and how they were selected.

p5/6. Might be helpful to acknowledge the limitations of the opt-in recruitment method, in that only recruiting people who currently have contact with and/or an interest in health services. Also can help explain some of the skews in the overall sample.

p6. Did you collect SEG, work status, education level? If so some of them would be helpful to include in the sample table to show the range of demographic characteristics across the sample.

p14/15. Really glad to see you bring in other studies in this area, and to demonstrate how the findings from your work align - adds important context so thank you for doing. Thank you also for highlighting how your work contributes new and important data. The international comparisons are also helpful.

p16. In the strengths and limitations I'd be interested to see some discussion about online deliberation - not from the POV of digital exclusion which you have covered, but how well this kind of work can be conducted online. E.g. how well did people interact with each other, weigh up the arguments? And how did facilitators ensure that participants understood the materials before discussing them? Any reflections here would be welcome as while the evidence base here is growing, it's still a relatively new area.

p16/17. Are there any plans to work with ICB teams to implement these recommendations, or work with them on viability? It would be helpful to include any broader impact plans if relevant.

https://doi.org/10.23889/ijpds.v5i3.2114.review.r1.dec

Dear Elizabeth Ford, Melanie Rees-Roberts , Kathryn Stanley, Katie Goddard , Sarah Giles, Jo Armes, Deborah Ikhile, Anotida Madzvamuse, Victoria Spencer-Hughes, Abraham George, Chris Farmer , Jackie Cassell,

We have reached a decision regarding your submission to International Journal of Population Data Science, "Understanding how to build a social licence for using novel linked datasets for planning and research in Kent, Surrey and Sussex: results of deliberative focus groups.".

Our decision is: Revisions Required

Please address the attached reviewers' comments and return to us: one clean and one tracked changes version of your revised manuscript, plus a point by point letter of response/rebuttal, by 21st November 2022.

Kind Regards

Dear Dr Gordon,

Many thanks for your time in considering our manuscript “Understanding how to build a social licence for using novel linked datasets for planning and research in Kent, Surrey and Sussex: results of deliberative focus groups” for consideration in the International Journal of Population Data Science Special Issue on Public Involvement & Engagement.

We were very pleased with the reviewers’ comments, and have outlined below how we have addressed them all.

Reviewer A:

• Many thanks for your thoughtful review of our manuscript. We have added a paragraph on the unique demographics and challenges of KSS to page 3:

  Located in the Southeast corner of England, and despite general affluence, KSS contains some of the most socially deprived wards in England, located in coastal towns. The region faces complex challenges for health and social care services with significant population growth while resources for service provision remain constrained. The region is characterized by an above-average number of looked-after children, and high levels of young people with emotional and mental health needs. The KSS population contains a greater proportion of older people than average for England and this older population is increasing quickly: growth of the older population (>65s) is four times greater than among younger populations (<65s) as rural and coastal locations are an attractive retirement prospect; this population growth will place significant demands on local health and social care services [5]. GP Practices in Medway, Swale and Thanet on the north east Kent coast, already have the highest ratio of people per GP in England [6]. As a result, health and social care services in KSS are increasingly supporting more frail people with complex health needs.

Good selection of references.

• Thank you

This study is extremely relevant as we seek to build a body of work on public acceptance and trust in data linkage and sharing. I would like to see more on why it is important to do local/ regional projects such as this, other than as an awareness raising exercise, otherwise each project will add very little insight to the evidence base.

• Thank you for asking us to examine the project motivation more carefully. We have added to page 4:

  Our aim was to initiate and establish a culture of public engagement and involvement in the region to grow alongside the development of the data assets. It is therefore important for us to involve local people in early discussions on data uses, rather than rely on knowledge on public views gained from other regions or national pieces of work.

Good choice of research design; very good to see acknowledgement of the need to inform before meaningful discussion can take place.

• Thank you

Regarding population and sample, it's a shame that so few participants left education after GCSE. I would like to see explicit reference to reaching out to this group in the three recommended principles.

• We have added this limitation to the strengths and limitations section on page 16 and in recommendations on page 17. Added text:

  In limitations: We also had a highly educated sample, with very few participants who left education after GCSEs (taken at age 16).

  In recommendations: This strategy should also aim to actively approach groups who were not well represented in our sample, such as those who left education at age 16, and residents of Kent's coastal and deprived areas.

Results section is comprehensive and well laid out.

• Thank you

Discussion and conclusion: Interesting to see the point about participants referring to potential benefits in patient-facing services, as I have heard similar in informal discussions. I would like to see your (brief) thoughts about some of the complexities involved in providing this - is it possible at all?

• We added the following reflections on page 15:

  It is important, during deliberative and reciprocal dialogues, that researchers should expect to explain the difference between data used for direct care and data used for secondary purposes, and to reiterate the different uses of data throughout discussions. They should also be mindful that public contributors must be given space, and control, over the content of discussions so that they can give insights into topics on which they are experts by their lived experience. By having open, two-way dialogue in this way, we achieve the spirit of reciprocity outlined in social license theory.

Any ideas for future research on social licence and data sharing?

• We have added in a new discussion paragraph headed “Future Research Recommendations” on page 18.

  “While public views on data sharing, including public concerns and suggested safeguards, are now fairly well established, there is not much research on how to transform public expectations and preferences into a testable “social license to operate”. Ultimately, teams will never be able to know if they have achieved a social license unless there is a framework for understanding how to achieve such a thing and how to measure or test whether it has been achieved. Muller et al. [31] argue that dataset teams and researchers using health data should move towards a shared or reflexive data governance model, which focuses on mutual learning, communication and deliberation, via establishing “extended fora” in which all stakeholders share power and are consulted [31]. This also identifies that achieving a social license is not a one-off event, instead it requires continuous maintenance. Researchers should consider developing methods to evaluate attempts to develop and maintain a social license to articulate steps or activities which best achieve this. It is also important to make sure that researcher and public views on what constitutes “public benefit” from data intensive research is aligned; research on what “public benefit” means to the public is ongoing [32, 33].

The title is clear and informative, and the paper is well written and easy to follow. The abstract is an accurate summary of the full paper.

We thank the reviewer for these extremely positive and supportive comments.

Reviewer B:

A really interesting research question, and a very appropriate method by which to answer it. The context and underlying issues were clearly explained, and the justification for the approach taken was clear. I enjoyed reading this, and how accessible it made a complex subject and range of arguments. I also particularly appreciated the inclusion of other studies that have been done in this area, as well as international examples. My comments mainly relate to method; a few additional details if possible would be very helpful to other practitioners undertaking online deliberation.

p5. It would be helpful to include details of who the expert speakers were, and how they were selected.

• We have added who the speakers were on page 5:

  Presentations were written and delivered by authors EF, MRR and JA, who are health and data researchers based in the KSS region.

p5/6. Might be helpful to acknowledge the limitations of the opt-in recruitment method, in that only recruiting people who currently have contact with and/or an interest in health services. Also can help explain some of the skews in the overall sample.

• We have added a sentence on page 16:

  The structured data we collected showed that most participants were fairly or very willing to share their medical records for research at the beginning of the focus groups, and this may have reflected the way the study was advertised via community, health and patient groups, thus targeting individuals who were already potentially interested in advocating for health service improvements.

p6. Did you collect SEG, work status, education level? If so some of them would be helpful to include in the sample table to show the range of demographic characteristics across the sample.

• Work status and education level are presented in Table 2. We did not collect any further information on socio-economic group.

p14/15. Really glad to see you bring in other studies in this area, and to demonstrate how the findings from your work align - adds important context so thank you for doing. Thank you also for highlighting how your work contributes new and important data. The international comparisons are also helpful.

• Thank you

p16. In the strengths and limitations I'd be interested to see some discussion about online deliberation - not from the POV of digital exclusion which you have covered, but how well this kind of work can be conducted online. E.g. how well did people interact with each other, weigh up the arguments? And how did facilitators ensure that participants understood the materials before discussing them? Any reflections here would be welcome as while the evidence base here is growing, it's still a relatively new area.

• We have added a paragraph on how we tried to ensure high quality deliberation in the online environment on page 17.

  We also acknowledge that online spaces are not necessarily the most comfortable for deliberative processes, with online discussion sometimes struggling to meet criteria for quality deliberation [31], although some research has found that online groups express more candid and direct opinions than face-to-face groups [32]. We aimed to maintain the deliberative approach online via personalised pre-group introduction sessions, breaking into small groups (N≤6) for discussion, conducting discussions in two shorter meetings rather than one long meeting, and having a dedicated technology facilitator separate from the group host facilitator to tackle any technology issues. We encouraged participants to keep their cameras on and facilitated ease of contribution through some icebreaker tasks early in the meeting. We also sent out preparatory materials before the group discussion and checked for comprehension of materials prior to and at the outset of the groups. These are all suggested elements of good practice for conducting deliberative discussions online [31].

p16/17. Are there any plans to work with ICB teams to implement these recommendations, or work with them on viability? It would be helpful to include any broader impact plans if relevant.

• We have added a sentence on page 17:

  Work is ongoing in Kent and Sussex to implement these recommendations and establish a standing “patient advisory panel” alongside the development of a secure data environment for health and care data.

In summary, we feel the reviewers’ comments have enabled us to add extra valuable details and discussion to the paper and it is therefore improved. We hope you will feel it is ready to accept in the journal, and we are happy to work with you to further improve it if necessary.

We look forward to hearing from you in due course.

Yours Sincerely,

Dr Elizabeth Ford
Reader in Health Data Science
Department of Primary Care and Public Health
Brighton and Sussex Medical School

https://doi.org/10.23889/ijpds.v5i3.2114.review.r2.dec

Dear Elizabeth Ford, Melanie Rees-Roberts , Kathryn Stanley, Katie Goddard , Sarah Giles, Jo Armes, Deborah Ikhile, Anotida Madzvamuse, Victoria Spencer-Hughes, Abraham George, Chris Farmer , Jackie Cassell:

We have reached a decision regarding your submission to International Journal of Population Data Science, "Understanding how to build a social licence for using novel linked datasets for planning and research in Kent, Surrey and Sussex: results of deliberative focus groups.", and are delighted to inform you that our decision is to: Accept Submission.

We look forward to working with you through the next stages towards final publication.

Please get in touch if you have any queries going forward. Thank you.

Kind Regards